Wednesday, September 3, 2014

The verdict is in! Doctor says Elena is suffering from tendinitis (left patella). This isn't a huge surprise, but I'm glad she saw a doctor--I wanted to rule out anything more serious.

But...how do you fix E's tendinitis when her regular method of movement is constantly pulling on her left kneecap? If she rests too much, she gets super stiff. If she doesn't rest enough, she will just make her knee worse. I have seen over the past few days her pain starts earlier and earlier in the day.

So, it's the "full court press" plan.

She got an ace bandage at the doctor (I had been using Coband at home, but we ran out) and I learned how to properly wrap her knee. Elena loves the compression, she says it feels much better with it wrapped up.

She'll be fitted for a neoprene knee brace. It's still pretty hot outside here, so I'm not so sure how she will tolerate it. We'll see once we get it. I assume she is going to love the feel of it, given her experience with compression so far.

We discussed using knee immobilizers for a while at home. We still have her old ones...she already enjoys her stander (it's her only comfort standing up) so I'm not sure if the immobilizers would be a better choice. The doctor assures me she can walk in them...I disagree, but we could try it (especially if only on her left knee?).

The doc said she could benefit from more flexion at her ankle, to give her less stress on her knee when moving. Meaning, a different brace than her KiddieGait (or no brace at all). This will be trial and error at home--not to mention, how can we work on this when she is supposed to be resting? Finding a right balance here is going to be a real challenge.

I had mentioned patella straps that runners use--they wear them right under their knees to prevent/alleviate tendinitis pain from running. Doc says we could definitely try it. Now I have to see if they make them small enough for Elena (my guess is she's the size of an average 6 year old).

General rest and stretching at home.

I mentioned that we LOVE LOVE LOVE our Dynasplint brace. E wears it every night, she says it feels good to wear it b/c it's the only brace that she can move in, and it's a great stretch. E normally wears it on her right leg, b/c that's the leg that is tighter. Doc gave us a prescription for another one, so she can have both legs stretched in a way she approves. (I am really excited, b/c this brace is expensive.)

At school, the plan is for Elena to participate at a lower level of intensity for PE and recess. When in the school, she must use her crutches to ambulate out of the classroom (frequently she'll just walk or touch the wall, or use just one crutch). When sitting, they'll elevate her left knee.

I guess we do this for 2 weeks, and reassess. Heck, it will probably take that long to get her neoprene brace! I think tendinitis is going to be more of a reoccurring phenomenon, given Elena's general method of walking.

Thank you for your comments, especially if you have CP and have experienced knee pain. Your experience is very valuable to me! If you can think of any activities that might help us, please comment. I'd especially like advice of how to be active and not aggravate her knee pain (if that exists).

Tuesday, September 2, 2014

Elena has patella alta (high kneecap) and has for some time. Her mobility and endurance took a big hit earlier this year, with school and homework and standardized testing. Basically, lots of sitting from January to May this year. We spent the summer getting back into stretching and different types of movement, gradually and in lots of different ways. It was great. E's range and mobility look good; her endurance still isn't as good as it used to be.

Last Friday something new happened. Elena complained of pain--which she rarely ever does--around her left knee. Left kneecap, to be precise. And not just complaining--sometimes it's miserable crying, and hurts her to walk. It's terrible. Elena rates the pain a 4 on a scale of 1-10. It seems to be localized on or right above her left kneecap. My guess is it is related to patella alta, and on her left b/c that is her predominant weight-bearing side. Basically, she carries most of her weight on her left leg, which is in a perpetual squat.

Her stance isn't new. Most of the time, she's looked better than ever--more even weight bearing, standing tall, happy (this is all observed at home). Except when she says it hurts, which is typically afternoons/evenings since Friday.

I have seen her at school and the only real difference is lots of running and more time on her left (without someone barking at her to try her right side, I guess?). My guess is she has muscle soreness due to running in gym and on the playground, and it's taken a toll since school started (two weeks) and hopefully she'll heal up. My fear is it's a CP-related muscle/tendon/bone problem, where there isn't a clear solution.

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Mission Statement

No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.

About Me

I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.